Saying No ... are heart kids spoilt?

Are Heart Kids spoilt? A discussion a friend and I had recently has really hit home today.

Do we, as heart parents, we asked spoil our heart kids. Do they get more than they would do if they were healthy? Do they get away with behaviour that they would not do otherwise? Yes we decided, whilst we set limits, the heart kids to tend to get a little spoilt. But hey we decided they deserved it ...

Actually, I think it goes a little deeper than that. Heart parents spoil heart children because in many cases, they simply want to pack all the love, gifts and treats they can into the time they have. Only too well do we all know how precious and fragile the grip on life can be at times. How, in spite of the best efforts of doctors and parents, time can be limited. Who cares if they are spoilt, when their time here is so short? Put in that perspective, its hardly surprising is it?

But what about heart children who are not life limited? The ones who, fates willing, will live a near normal life, with one or two surgeries? The ones, pre op, that are not yet ill enough to need that surgery, but not quite as fit as their peers? Do they deserve to be spoilt? To get whatever (within reason) they want, whatever the cost?

Yep, I think they do. Why? because of all the things that you HAVE to say no to. Today Skye came home from school bubbling with excitement. She had a list of after school clubs to choose from. Cookery, Bible, hama beads, dance, gymnastics ..... and football. Skye, being Skye wants to go to football club. Its free, so why should I deny her? Because its outdoors, they wear lightweight clothing and it involves alot of running around.

Now any one of those on its own, would probably be a concern, but not a reason for saying an absolute No. She is doing pretty well at the moment. And I am so so grateful that she is. That she can run. So many heart children can barely even walk let alone run. But even my little princess has her limitations. The combination of the cold weather we can now expect as we move towards winter, the flimsy clothing of football, and the running around would spell disaster. As the cold bites, Skye gets bluer, her SATs drop, but being a stubborn moo (can't think where she gets it from) she will be determined to soldier on, to keep up with her peers. As she needs more oxygen to run, she will get bluer ... and who knows what happens next? I do not want to even think about it.

So tonight, for the first time in a long while I have had to say No to something Skye really wants to do. Skye was upset, I was upset. I sat with her, explained, and she knew I was right. She said she understood. But it doesn't stop me wanting to cry, that my little girl who is so tough, so brave and so WELL cannot do what she wants :-(

Am going to have a chat with the school tommorow, see if we can come up with some ideas, to help her deal with this. Maybe we can find a happy medium, so she can do something.. or maybe I will take her somewhere special to make up for it? Buy her a treat and spoil her just that little bit more.

I add to this another little thought. Another reason for wanting to spoil our heart children. Today a very beautiful little girl, should of started school. She was beautiful, brave, tough and she had a knackered heart valve. She had complications and ended up needing a heart transplant. She was fortunate, one of the lucky ones, she got her new heart. And she went home, to live life to the full. And live life she did!! Tragically, little Zoe Chambers had just one year of living a full life, before she passed away, in the loving arms of her mum. Today Zoe, should of put on a little uniform, marched into school, giving her mum that cheeky smile. Probably sending mum packing so she could get on with the fun. And Zoe, I hope that up in the Angels playground today, you did exactly that.

In Zoe's honour, in honour of all the other little heart angels who should be walking through the school gates, can you please please sign the organ donor register? But Zoe died I hear you say. Yes she did. BUT she had a year, a year of fun, mischief, of NORMALITY. Her family have a years worth of happy memories to counter the bad ones, photos and the knowledge that, because of the generosity of one family, one donor, Zoe Chambers was able to live her life to the max. Isn't it worth it? I think so. I am sure that Zoes family feel the same. For Zoe, please sign up NOW